Moderated Online Data-Collection for Developmental Research: Methods and Replications.
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ABSTRACT:
SUBMITTER: Chuey A
PROVIDER: S-EPMC8595939 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundLarge birth cohort studies are extremely valuable in assessing associations between early life exposures and long-term outcomes. Establishing new birth cohorts is challenging due to declining participation rates. Online methods of data collection may increase feasibility, but have not been evaluated thoroughly.ObjectiveThe primary objective of the ongoing PRegnancy and Infant DEvelopment (PRIDE) Study is to identify exposures during pregnancy and in early life that may affect short-term or long-term health of mother and/or child. In this manuscript, we aimed to evaluate methods of recruitment and online data collection applied.PopulationDutch women aged ≥18 years in early pregnancy.DesignProspective cohort study.MethodsInitially, only prenatal care providers recruited participants, but alternative recruitment methods were added as a result of disappointing participation rates, including collaboration with "Moeders voor Moeders" (organisation that visits women in early pregnancy) and Facebook advertisements. Data on demographic characteristics, obstetric history, maternal health, life style factors, occupational exposures, nutrition, pregnancy complications, and infant outcomes are primarily collected through Web-based questionnaires at multiple time points during and after pregnancy. Additional data collection components include paternal questionnaires, blood and saliva sampling, and linkage to medical records.Preliminary resultsBy September 2019, 9573 women were included in the PRIDE Study, of which 1.3% completed paper-based questionnaires. Mean age of the women analysed was 30.6 years, 71.1% had a high level of education, 57.2% were primiparae, and mean gestational age at enrolment was 9.9 (range 3, 37) weeks, with slight differences between recruitment methods. Pregnancy outcome was known for 89.8%. Retention rate at 6 months after the estimated date of delivery was estimated at 70%. Multiple validation studies conducted within the PRIDE Study indicated high data quality.Conclusion(s)Although challenging and time-consuming, online methods for recruitment and data collection may enable the establishment of new birth cohort studies.
| S-EPMC7496449 | biostudies-literature
Project description: Not available
| S-EPMC4857496 | biostudies-literature
Project description:Understanding how animals move within their environment is a burgeoning field of research. Despite this, relatively basic data, such as the locomotor speeds that animals choose to walk at in the wild, are sparse. If animals choose to walk with dynamic similarity, they will move at equal dimensionless speeds, represented by Froude number (Fr). Fr may be interpreted from simple limb kinematics obtained from video data. Here, using Internet videos, limb kinematics were measured in 112 bird and mammal species weighing between 0.61 and 5400?kg. This novel method of data collection enabled the determination of kinematics for animals walking at their self-selected speeds without the need for exhaustive fieldwork. At larger sizes, both birds and mammals prefer to walk at slower relative speeds and relative stride frequencies, as preferred Fr decreased in larger species, indicating that Fr may not be a good predictor of preferred locomotor speeds. This may result from the observation that the minimum cost of transport is approached at lower Fr in larger species. Birds walk with higher duty factors, lower stride frequencies and longer stance times compared to mammals at self-selected speeds. The trend towards lower preferred Fr is also apparent in extinct vertebrate species.
| S-EPMC4933880 | biostudies-other
Project description:The 2018 Nucleic Acids Research Database Issue contains 181 papers spanning molecular biology. Among them, 82 are new and 84 are updates describing resources that appeared in the Issue previously. The remaining 15 cover databases most recently published elsewhere. Databases in the area of nucleic acids include 3DIV for visualisation of data on genome 3D structure and RNArchitecture, a hierarchical classification of RNA families. Protein databases include the established SMART, ELM and MEROPS while GPCRdb and the newcomer STCRDab cover families of biomedical interest. In the area of metabolism, HMDB and Reactome both report new features while PULDB appears in NAR for the first time. This issue also contains reports on genomics resources including Ensembl, the UCSC Genome Browser and ENCODE. Update papers from the IUPHAR/BPS Guide to Pharmacology and DrugBank are highlights of the drug and drug target section while a number of proteomics databases including proteomicsDB are also covered. The entire Database Issue is freely available online on the Nucleic Acids Research website (https://academic.oup.com/nar). The NAR online Molecular Biology Database Collection has been updated, reviewing 138 entries, adding 88 new resources and eliminating 47 discontinued URLs, bringing the current total to 1737 databases. It is available at http://www.oxfordjournals.org/nar/database/c/.
| S-EPMC5753253 | biostudies-literature
Project description:The 2024 Nucleic Acids Research database issue contains 180 papers from across biology and neighbouring disciplines. There are 90 papers reporting on new databases and 83 updates from resources previously published in the Issue. Updates from databases most recently published elsewhere account for a further seven. Nucleic acid databases include the new NAKB for structural information and updates from Genbank, ENA, GEO, Tarbase and JASPAR. The Issue's Breakthrough Article concerns NMPFamsDB for novel prokaryotic protein families and the AlphaFold Protein Structure Database has an important update. Metabolism is covered by updates from Reactome, Wikipathways and Metabolights. Microbes are covered by RefSeq, UNITE, SPIRE and P10K; viruses by ViralZone and PhageScope. Medically-oriented databases include the familiar COSMIC, Drugbank and TTD. Genomics-related resources include Ensembl, UCSC Genome Browser and Monarch. New arrivals cover plant imaging (OPIA and PlantPAD) and crop plants (SoyMD, TCOD and CropGS-Hub). The entire Database Issue is freely available online on the Nucleic Acids Research website (https://academic.oup.com/nar). Over the last year the NAR online Molecular Biology Database Collection has been updated, reviewing 1060 entries, adding 97 new resources and eliminating 388 discontinued URLs bringing the current total to 1959 databases. It is available at http://www.oxfordjournals.org/nar/database/c/.
| S-EPMC10767945 | biostudies-literature
Project description:BackgroundMicrobiota profiles are strongly influenced by many technical aspects that impact the ability of researchers to compare results. To investigate and identify potential biases introduced by technical variations, we compared several approaches throughout the entire workflow of a microbiome study, from sample collection to sequencing, using commercially available mock communities (from bacterial strains as well as from DNA) and multiple human fecal samples, including a large set of positive controls created as a random mix of several participant samples.MethodsHuman fecal material was sampled, and aliquots were used to test two commercially available stabilization solutions (OMNIgene·GUT and Zymo Research) in comparison to samples frozen immediately upon collection. In addition, the methodology for DNA extraction, input of DNA, or the number of PCR cycles were analyzed. Furthermore, to investigate the potential batch effects in DNA extraction, sequencing, and barcoding, we included 139 positive controls.ResultsSamples preserved in both the stabilization buffers limited the overgrowth of Enterobacteriaceae when compared to unpreserved samples stored at room temperature (RT). These stabilized samples stored at RT were different from immediately frozen samples, where the relative abundance of Bacteroidota was higher and Actinobacteriota and Firmicutes were lower. As reported previously, the method used for cell disruption was a major contributor to variation in microbiota composition. In addition, a high number of cycles during PCR lead to an increase in contaminants detected in the negative controls. The DNA extraction had a significant impact on the microbial composition, also observed with the use of different Illumina barcodes during library preparation and sequencing, while no batch effect was observed in replicate runs.ConclusionOur study reaffirms the importance of the mechanical cell disruption method and immediate frozen storage as critical aspects in fecal microbiota studies. A comparison of storage conditions revealed that the bias was limited in RT samples preserved in stabilization systems, and these may be a suitable compromise when logistics are challenging due to the size or location of a study. Moreover, to reduce the effect of contaminants in fecal microbiota profiling studies, we suggest the use of ~125 pg input DNA and 25 PCR cycles as optimal parameters during library preparation.
| S-EPMC10101209 | biostudies-literature
Project description:The primary objective of this article was to describe recruitment, data collection, and methods for a longitudinal, multicenter study involving children with bilateral mild to severe hearing loss. The goals of this research program were to characterize the developmental outcomes of children with mild to severe bilateral hearing loss during infancy and the preschool years. Furthermore, the researchers examined how these outcomes were associated with the child's hearing loss and how home background and clinical interventions mediated and moderated these outcomes.The participants in this study were children who are hard of hearing (CHH) and children with normal hearing (CNH) who provided comparison data. CHH were eligible for participation if (1) their chronological age was between 6 months and 7 years of age at the time of recruitment, (2) they had a better-ear pure-tone average of 25 to 75 dB HL, (3) they had not received a cochlear implant, (4) they were from homes where English was the primary language, and (5) they did not demonstrate significant cognitive or motor delays. Across the time span of recruitment, 430 parents of potential children with hearing loss made contact with the research group. This resulted in 317 CHH who qualified for enrollment. In addition, 117 CNH qualified for enrollment. An accelerated longitudinal design was used, in which multiple age cohorts were followed long enough to provide overlap. Specifically, children were recruited and enrolled continuously across an age span of 6.5 years and were followed for at least 3 years. This design allowed for tests of time (period) versus cohort age effects that could arise by changes in services and technology over time, yet still allowed for examination of important developmental relationships.The distribution of degree of hearing loss for the CHH showed that the majority of CHH had moderate or moderate-to-severe hearing losses, indicating that the sample undersampled children with mild HL. For mothers of both CHH and CNH, the distribution of maternal education level showed that few mothers lacked at least a high school education and a slight majority had completed a bachelor's degree, suggesting that this sample of research volunteers was more advantaged than the United States population. The test battery consisted of a variety of measures concerning participants' hearing and behavioral development. These data were gathered in sessions during which the child was examined by an audiologist and a speech-language examiner. In addition, questionnaires concerning the child's behavior and development were completed by the parents.The Outcomes of Children with Hearing Loss study was intended to examine the relationship between variation in hearing ability across children with normal and mild to severe hearing loss and variation in their outcomes across several domains of development. In addition, the research team sought to document important mediators and moderators that act between the hearing loss and the outcomes. Because the study design provided for the examination of outcomes throughout infancy and early childhood, it was necessary to employ a number of different measures of the same construct to accommodate changes in developmental performance across age. This resulted in a large matrix of measures across variable types and developmental levels, as described in this manuscript.
| S-EPMC4704117 | biostudies-other
Project description:BackgroundDigital data collection has the potential to reduce participant burden in research projects that require extensive registrations from participants. To achieve this, a digital data collection tool needs to address potential barriers and motivations for participation.ObjectiveThis study aimed to identify factors that may affect motivation for participation and adoption of a digital data collection tool in a research project on nutrition and multiple sclerosis (MS).MethodsThe study was designed as a sequential mixed methods study with 3 phases. In phase 1, 15 semistructured interviews were conducted in a Danish population of individuals with MS. Interview guide frameworks were based on dimensions from the electronic health literacy framework and the Health Education Impact Questionnaire. Data from phase 1 were analyzed in a content analysis, and findings were used to inform the survey design in phase 2 that validates the results from the content analysis in a larger population. The survey consisted of 14 items, and it was sent to 1000 individuals with MS (response rate 42.5%). In phase 3, participants in 3 focus group interviews discussed how findings from phases 1 and 2 might affect motivation for participation and adoption of the digital tool.ResultsThe following 3 categories related to barriers and incentives for participation were identified in the content analysis of the 15 individual interviews: (1) life with MS, (2) use of technology, and (3) participation and incentives. Phase 1 findings were tested in phase 2's survey in a larger population (n=1000). The majority of participants were comfortable using smartphone technologies and participated actively on social media platforms. MS symptoms did cause limitations in the use of Web pages and apps when the given pages had screen clutter, too many colors, or too small buttons. Life with MS meant that most participants had to ration their energy levels. Support from family and friends was important to participants, but support could also come in the form of physical aids (walking aids and similar) and digital aids (reminders, calendar functions, and medication management). Factors that could discourage participation were particularly related to the time it would take every day. The biggest motivations for participation were to contribute to research in MS, to learn more about one's own MS and what affects it, and to be able to exchange experiences with other people with MS.ConclusionsMS causes limitations that put demands on tools developed for digital data collection. A digital data collection tool can increase chances of high adoption rates, but it needs to be supplemented with a clear and simple project design and continuous communication with participants. Motivational factors should be considered in both study design and the development of a digital data collection tool for research.
| S-EPMC6812479 | biostudies-literature
Project description:BACKGROUND:The collection of data and biospecimens which characterize patients and probands in-depth is a core element of modern biomedical research. Relevant data must be considered highly sensitive and it needs to be protected from unauthorized use and re-identification. In this context, laws, regulations, guidelines and best-practices often recommend or mandate pseudonymization, which means that directly identifying data of subjects (e.g. names and addresses) is stored separately from data which is primarily needed for scientific analyses. DISCUSSION:When (authorized) re-identification of subjects is not an exceptional but a common procedure, e.g. due to longitudinal data collection, implementing pseudonymization can significantly increase the complexity of software solutions. For example, data stored in distributed databases, need to be dynamically combined with each other, which requires additional interfaces for communicating between the various subsystems. This increased complexity may lead to new attack vectors for intruders. Obviously, this is in contrast to the objective of improving data protection. What is lacking is a standardized process of evaluating and reporting risks, threats and countermeasures, which can be used to test whether integrating pseudonymization methods into data collection systems actually improves upon the degree of protection provided by system designs that simply follow common IT security best practices and implement fine-grained role-based access control models. To demonstrate that the methods used to describe systems employing pseudonymized data management are currently heterogeneous and ad-hoc, we examined the extent to which twelve recent studies address each of the six basic security properties defined by the International Organization for Standardization (ISO) standard 27,000. We show inconsistencies across the studies, with most of them failing to mention one or more security properties. CONCLUSION:We discuss the degree of privacy protection provided by implementing pseudonymization into research data collection processes. We conclude that (1) more research is needed on the interplay of pseudonymity, information security and data protection, (2) problem-specific guidelines for evaluating and reporting risks, threats and countermeasures should be developed and that (3) future work on pseudonymized research data collection should include the results of such structured and integrated analyses.
| S-EPMC6727563 | biostudies-literature
Project description:BackgroundThe ubiquitous use of mobile phones in sending and receiving text messages has become a norm for young people. Undeniably, text messaging has become a new and important communication medium not only in the social realm but in education as well. The aim of this study is to evaluate the effectiveness of using text messaging as a means to collect data for a medical research project.A cross sectional study was carried out during a double blind, randomized controlled trial to assess the efficacy and safety of a probiotic in the management of Irritable Bowel Syndrome (IBS). The study aim was to assess the response rate of weekly symptom reports via Short Message Service (SMS). The subjects were undergraduates in a private medical university in Malaysia. They were identified through a previous university wide study as suffering from IBS based on Rome III criteria. The subjects were randomly assigned to either the treatment arm receiving a daily probiotic, or the placebo arm. They were required to score their symptoms using eight-item-questionnaires at baseline, and thereafter weekly, for a total of 8 weeks. All subjects were given the choice to communicate their symptom scores by text messaging via mobile phones or by email. SMS text messages were sent to remind trial subjects to attend face-to-face visits and to complete a paper based 34-item-questionnaires on IBS quality of life assessment at baseline and at end of 8 weeks.FindingsThe response rate of weekly symptom scores via Short Message Service (SMS) from a total of 38 subjects was 100%. Through the study, 342 reports were submitted: 33.3% of these were received on the due date without reminder, 60.0% one day after the deadline, after a single reminder, 6.1% 2-3 days after the deadline, after 2-3 reminders and 0.6% 5 days after the deadline, after SMS, phone reminder and face-to-face encounter. All SMS symptom reports, whether on time or late, were complete. With the help of SMS reminder, all trial subjects completed the paper based IBS quality of life assessment at baseline and at end of study.ConclusionsThis study found using text messaging via mobile phone an excellent instrument for collecting weekly symptom reports in response to trial medication, reminding trial subjects to attend face to face visits and completing more complex paper based evaluation. The 100% response rate of weekly symptom reports was facilitated by using simple number codes for SMS submission.Trial registrationNot appropriate.
| S-EPMC3022815 | biostudies-literature